Super Bon! – Page 3 – Naturalized, but not natural

4 Jan 2025 Cancer Crawl: flareup strategies

Happy new year! I have boring resolutions: keep taking my cancer drugs (hardly counts–I am a compliant patient) and keep doing PT and related exercises in an effort to regain strength and endurance. (Also don’t need much motivation here.)

My 2024 in review is absurd and not worth recounting here–you can look back to older posts if you’re curious for some highs and lows. It was a year of extremes for me.

This post is mostly an update from my last post regarding strategies for living alone while chronically ill. I received some long and thoughtful messages from friends near and far, I got lot of good suggestions. Thank you friends! Every chronic illness is different so the flareups and remedies take different forms. Take what’s useful for you–that’s what I did.

Beyond monitoring and stations, here are some suggestions:

Everyone agrees with “don’t wait to take the drugs” — getting out ahead of symptoms with medications that treat them is essential and appears to be the best thing a person with any kind of flareup can do. So I will be much more aggressive with taking drugs.

On the emergency call list, people differed in terms of execution. Ellen Samuels suggested having a rotating group of people so nobody is on duty all of the time and nobody gets worn out. Sara Grimes suggested having one primary person and one backup, and giving them one another’s contact information. In the end, I am going to be optimistic and go with option 2 here. Less overhead for me. I really don’t think I’ll need the list, but better to have it.

I have already drafted an emergency document with too much information in it, and on Lisa Henderson’s suggestion, created codes for different messages so I don’t have to type anything out or try to talk. (Someone else suggested emoji). EG, 911-v is vomiting. Charming, I know. I would need to redact some things to share it publicly but if you want to see it for some reason, ping me.

“Witchcraft list” / “Comfort Supplies”: This is the most intriguing to me, but also slightly puzzling for my situation. The witchcraft list is from Sam Thrift, who also taught me the term “migraineur,” which I love. She says she has to remember to do non-medical things to make herself feel better when having an episode. The list includes all sorts of things she can do for herself. Sara Grimes’ idea of comfort supplies is similar but objects–blankets, heating pad, etc. Ellen Samuels also suggested the heating pad for chills, and so there is now one plugged in next to the bed. She calls hers her “boyfriend.” I will need to name mine.

I am wracking my brain a bit as to what other comfort supplies/witchcraft practices would be for me, but I think self-distraction might be the way to go. Even just putting on some music. I’ve also got blankets ready to go in the living room (and extras in the bedroom).

Bringing in help: This was Sam’s suggestion. I don’t want full on home care but I do hire people to clean, change the bed, wash towels etc. And I will have friends help me carry stuff up stairs when I need that. Ellen suggested https://lotsahelpinghands.com which an interesting resource. Or a Google spreadsheet. I go this route if my needs are at all complicated. For now I’ll just text people. It seems a lot of these tools are set up for bringing people food, which I mostly don’t want or need.

(A side note: resisting offers of food is quite a job. It’s the first thing people want to do for the sick, and part of many cultural traditions. It’s the “obvious” thing to do, except in a situation like mine, it turns out.)

Old standbys: These aren’t good in acute episodes like mine, but they are good as general practices and also for episodes of depression or other “slower” kinds of flareups. Get as much sunshine as possible. Stay vigilant with meds. Practice anxiety-reducing breathing.

Techy stuff:

Alexa or other smart speaker device: Sam set this up for a relative. It allows you to operate with your voice and not have to have your phone on you to request medical support.

Extra backup phone battery in case of ER trips. Waits are long everywhere. I have one for other reasons but it’ll be useful if I needed to go.

Sara suggested a smart watch to monitor body temperature. I’m considering this one. Not sure if it’s accurate enough, and right now I’m making do with thermometers at all my stations.

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Symptom and Side Effect Update:

It’s been a few days, so time to check in. First of all, a mental health check. As of yesterday, Carrie is in California so this whole solo thing is now happening. To say I am having a lot of mixed feelings about it would be an understatement. But it’s early days and I am figuring things out. She has sent tons of cat footage though, so that’s something. I think the issue is partly that we are on break until almost the end of the month, so it’s a lot of unstructured time and many of the other fellows are away. Whereas Carrie’s fellowship starts up again on Monday. The plan had been for me to be out there with her. But I actually do need some alone time for reflection, and I also need some time to write, so I will start leaning into that next week.

No major fevers since my last update. I do often wake up around 99.5 but I think that’s because there’s an 10-12 hour break with the Tylenol between going to bed and getting up. It goes down after I get drugs in me.

No vomiting or shakes. Yay!

This week’s mystery is extra blood in the phlegm I’m coughing up, which the nurse practitioner at the Cancer Center doesn’t seem worried about unless a lot more comes out. But my throat does feel irritated, and last night I had a long and nasty coughing fit where it felt like I couldn’t get stuff out of my throat. I have an ENT appointment later this month. I’m guessing it’s related to my irradiated pharynx, ie, cancer treatment from 15 years ago. It seems very cold things, like ice cream, can trigger it. At least I’m hoping that’s it.

29 Dec 2024 Cancer Crawl: shake it like you mean it, or not chillaxed

A request before we get into the weeds with this post: I would be very curious to know from other chronically ill friends how you prepare for a debilitating “flare up” or “episode” when you are on your own. Over the years, I’ve learned a lot from years of watching Carrie deal with blood sugar management: test and monitor; treat the diabetic first, then fix or adjust the equipment; have everything you need on you; have stuff in multiple places, so that’s what I’ve done.

At 2am Monday I woke up shaking so hard the whole bed was shaking. Brutal. This is one of the side effects of my cancer meds: rapidly spiking fevers, accompanied by chills and uncontrollable shaking. Sometimes the chills come as a warning about the fever to come, sometimes they appear at the same time. Sometimes I hyperventilate because I’m curled up in a ball and not giving myself the lung capacity to properly exhale. I need to stretch out and open up my chest, which is the opposite impulse of what one does when very cold. Carrie went and got me Tylenol, Advil, applesauce and Ativan, piled blankets on me, and 15 minutes later it started to subside.

Carrie leaves for California early Friday morning. Apart from the “missing your spouse” part of it I am mostly fine with it. The biggest concern for me has been two debilitating conditions that sort of take over my body like demons: the uncontrolled, repeated vomiting that grows out of a coughing fit and can go on for 90 minutes if untreated; and the aforementioned shakes/chills. So how to deal with these while living alone? Here’s what I’ve come up with:

Monitor, and act more quickly/preemptively. I’ve been known to “wait and see if the vomiting subsides” before hitting it with the Ativan/Zofran combo because I don’t like how it makes me feel for the next day or so. (Note: I am overly optimistic and this has never worked. Draw your own conclusions about why I kept trying.) But the vomiting is infinitely worse. So if I vomit more than once, I’m hitting it hard, right away, and will just deal with the brain fog. Ditto with Tylenol/Advil for fever, which I will monitor more closely.
Stations. The problem with the shakes is they often start while I’m asleep, so I wake up shivering, shaking, and if I’m not careful, hyperventilating.That means having meds ready to hand in the bedroom and living room, the two places where that could happen. I’ve done the same for the repeated vomiting, adding a third station in the kitchen, which is the other place it’s happened. Each station has a sort of “kit” set up with the relevant medications. And for the shakes, I’m placed everything in a very-easy-to-open container with meds (more than I need so I can drop some), applesauce and a spoon to swallow them, all ready to go.

I also have a bag with all the meds I’d need in emergency that lives in my purse or backpack, whatever I am taking out of the apartment. (I also carry tissues and an emesis bag with me for crises.)
Emergency call list. I have a long list of local people who have volunteered to help. If I can get the drugs into me, they work. If for some reason I can’t get the drugs into me, I can call someone to help, though I am not sure I would be comprehensible on the phone. Still, that’s something. And better than 911.

Symptom / Side Effect Report:

Sometimes I just don’t understand my body. With my oncologists, I’d worked out a plan where I’d take a couple days off from the meds and then resume them when the fever / shakes hit. That worked well until last week, when I went back on the meds and within 30 minutes had a fever. So I stopped, my oncologist here sent over a steroid prescription to the pharmacy, which I picked up Friday night. The whole time there and back I was thinking “this is harder than it should be” — turns out I had a fever the whole time, which just goes to show that I need to be better at self-monitoring.

So, armed with steroids, I start the meds again Saturday morning. No fever. In fact, I feel good. I even feel good enough to clean up a bit and wire up a little guitar looping area in the front of the apartment. Still no fever in the afternoon. I take the meds last night, fever shows up 30 minutes later, and I hit it with Tylenol and Advil, all good. Each time I wake up in the middle of the night last night, no fever. Today, no fever.

I had been taking 1g of Tylenol 4 times a day, which is one more than they tell you to, and I was worried that going down to 3 was not working for my fevers, but it did yesterday.

I have one theory about this, and it is much too early to evaluate it because it’s only day 2 back on the meds after my abortive restart. Perhaps it is dabrafenib causing the fevers (that med is also doing the heavy lifting on fighting the cancer) and it is trametinib which moderates dabrafenib’s feverish tendencies. You take trametinib once a day (morning or night) and dabrafenib twice a day (morning and night, about 12 hours apart, give or take). I had been taking trametinib at night on the advice of someone on my cancer group who said it made them tired. But at my last appointment, the doctor noted that they recommend taking it in the morning. When I asked why it mattered she said “it doesn’t really, just do what works for you.” so when I restarted, I took it in the morning. Is it really that simple? It’s too early to tell, and I strongly doubt I will be shake-free for all of my time apart from Carrie, but at least I have well-labelled, easy-to-open boxes waiting for me.

27 Dec Cancer Crawl: old cancer books: Susan Sontag Illness as Metaphor

“So what are you doing to distract yourself and stimulate your mind?” asked a friend on a recent Zoom call. My reply was “well, I’m rereading some classic cancer books.” Feel free to judge my mental health harshly, but it’s working for me. I’ve finished Audre Lorde’s Cancer Journals and Susan Sontag’s Illness as Metaphor.

These books are classics for a reason. Both written in the 1970s (Cancer Journals appeared as a book in 1980 but the essays were written earlier), they punctured fear, stigma, and silence about cancer at a time when those were three dominant poses. Not that everything is hunky-dory now, but there is certainly less stigma around cancer today than when they wrote. They are both very much of their time in the references, terminology, framing, style, and concerns, but I find that distance quite comforting and clarifying.

In this post, I’ll talk about Sontag and my reflections on it.

Sontag connected cancer to social theory, showing how it–and tuberculosis before it–was used to explain everything from morality and character to the organization of societies.

Two things struck me from Sontag on this reading. First, her prediction that a single cause would eventually be discovered for all cancers, the way that a single cause had been discovered for so many other diseases, and that once that cause had been discovered, the mystery and metaphoric power of the disease would wither away, as it had for TB. It seems that things are moving in the exact opposite direction. The category of cancer is exploding, and it may be possible that many things called cancers–including mine–will soon have other more specific names (mine already sort of does). “High grade metastatic thyroid cancer BRAF-600 mutation” just doesn’t have the metaphoric power that a more vanilla “cancer” has, though it does have that power-word inside the phrase.

Illness as Metaphor is mostly an exercise in close reading, or perhaps more accurately, having-closely-read. Sontag draws from a wide range of examples of TB and cancer talk in the English-language canon for her evidence, and the book is almost entirely about cataloguing the many metaphoric uses of TB and cancer. But there is a kernel of an argument that appears at the beginning and end, and remains implied throughout: the diseases-as-metaphor usage is never good for–or helpful to–the person with the disease. She explicitly says that we should not be using diseases as metaphors.

In that way Sontag’s argument lines up with contemporary language politics around disability and chronic illness. The stakes are different because one has cancer. One is blind or d/Deaf. So a phrase like “they were blind to the implications of” or “they were deaf to the concerns of” is qualitatively different from something like “unwanted AI assistants are metastasizing across all our applications.” (And they are!)

Metastases are pretty much always unwanted and are not generally assumed to be the fault of the person (lung cancers and a few others aside, especially in the US, where the culture is still incredibly moralistic about health as a way of covering up its crushing death taboo–but I will have to write about moralism of the US medical system another day). Being blind says nothing about how perceptive or wise one is, and being deaf says nothing about how empathetic one is, so it’s just really rude to use those embodied conditions as metaphors for generalized human moral failures of which we are all capable. It’s like using “Jew” as a verb to mean “swindle.”

The issue with cancer used as a metaphor is slightly different. The mystery around cancer endows the metaphor with special agency and power. Cancer can destroy in a way that modern medicine and science cannot understand or repair. That’s juicy for writing, but not necessarily helpful for the person dealing with it. Metaphoric cancer is not predictable. It is amoral (but think about it–what disease is moral?). It is both of the body and not of the body–self and other (but think about it–what disease doesn’t bridge the Western mind/body divide?). Endowing the disease with all this power and category violation can overwhelm the perception of the person living with the actual disease, which is neither metaphorical, nor ambiguous, even if it’s also not predictable.

I feel this acutely in my experience with talk about the disease. I think it’s one of the reasons that medical professionals and literature use so much euphemism around side effects from treatment (the other is practical: in some cases, they believe some patients would just never do the treatments if they knew the side effects ahead of time–it would scare them off–though now we enter Ivan Illich Medical Nemesis territory, which is also on my reading list).

Sometimes I am concerned that the word cancer with all of its fraught and radiant signification overwhelms people’s perception of me as a person living with disease. I am feeling this right now as loads of wonderful expressions of solidarity enter my inbox, because how can someone who hasn’t experienced it as a patient or caregiver even comprehend cancer in the brain? Especially in my intellectual set! I sure as shit couldn’t have.

Mostly, living with the disease is much more mundane than the dominant metaphors would allow. But they–along with American medical moralism and the death taboo, and probably other factors I’m not thinking of–also foreclose the real existential reflection that any dangerous illness demands. In sum, when cancer is used as part of the current metaphoric repertoire, people with cancer get the worst of both worlds.

Of course, it’s more complicated than what I’ve laid out here. I spend a lot of time with my students sorting out the limits of language politics — it’s one thing in formal writing or “theorizing” and another in interpersonal conversation. People can mean well and still use all kind of problematic language, and most of the time it would be wrong to highlight the language as a bigger problem than their well-meaning is a benefit. The same goes for people actually trying to make sense of their own disease experience. There is a subset of people in my thyroid cancer support groups who want to use martial metaphors to describe their experience–“cancer warrior” and such. My view in those situations are that people need to do whatever works for them, even if I think the war metaphors are overall quite problematic. When it comes to actual people suffering or seeking to alleviate suffering, I think we’ve got to cut ourselves and them some slack. Multiple things can be true, and we can hold a critique of language in one hand, and a sense of care and justice in the other, and balance them in the moment.

As for me, I prefer a navigation metaphor. So I refer to myself as a “thyronaut.”

Next up: Andre Lorde Cancer Journals.

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One note: the current Wikipedia summary of Illness as Metaphor says that Sontag’s main critique of metaphor is that it is victim-blaming. While she is highly critical of victim-blaming discourse throughout Illness as Metaphor, I think that is wrong as a characterization of her overarching claim about metaphor. She also addresses many other uses of metaphor from the sexualization of TB patients in 19th century literature to German Nazis’ switch from TB to cancer metaphors to describe Jews.

26 Dec 2024 Cancer Crawl: Smol Mets; a few achievements to note

Last Friday and this Monday we had hour-long calls about my brain mets. Friday we spoke with my Montreal oncologist, and Monday with a radiation oncologist at Mass General. The plan for now is to do nothing and see what the next scan shows. If things are stable, we wait for the next scan, and on and on. Watch-and-wait.

But here’s what we learned in more detail:

The mets are small. On Monday’s Zoom call, the radiation oncologist took us through the MRI scan so we could see them, which we clearly could. He also showed us the October scan for comparison. I don’t know how metastasis actually works, so it’s not clear to me when or why things “escaped containment” in my lungs but my guess is it happened as the cancer morphed from normal metastatic thyroid cancer to my current “high grade” version.

Everyone thinks the mets are small as of this scan, and wants to watch-and-wait. That could change at the next scan, or the scan after that, but it’s the plan for now. We are in full favour of going slow.

Treatments are tricky. It’s possible the drugs I’m on will help, but it’s also possible they won’t. There might be another drug that could help, but we were told that brain mets don’t generally respond well to drugs because of the blood-brain barrier. It’s also not clear what that would mean for my lungs–you can only be so toxic at any given time.

IV chemo also generally isn’t used for brain mets.

That leaves radiation if the mets grow or more of them appear and drugs don’t work. One approach is to wait for lesions to get a bit bigger and zap them individually as they become problematic. That’s what happened in my lungs this summer. There’s a point where there are too many, or they are growing too fast.

Another approach is called “whole brain radiation.” Except it’s not really the whole brain anymore. They spare the hippocampus and there’s a clinical study where they leave out other areas, and they can also still focus on targeting individual mets while they are at it. (I am not sure if I would be eligible for the clinical trial, or able to do it since my US medical insurance ends May 31st). Radiating the “whole brain” can lead to all sorts of short term and long term side-effects, which like all side effects are undesirable. Most of the talk about side effects is very euphemistic, using terms like “cognitive function,” and we really pressed the radiation oncologist on what that meant in the concrete. I don’t like euphemism in medical talk. We got into details, which I will spare you for now. I do believe it would be possible for me to lead a fulfilling life post-recovery (which might be a few months). But it might include new disabilities. And as one of my favourite lines from Alison Kafer goes, just because one has some disabilities and has accepted them, one doesn’t necessarily want more. Ok, I don’t actually care that much about hair loss at this point.

So whole brain radiation sounds to me like a treatment of last resort or near-last-resort, but also, there aren’t a ton of other treatments, so this decision could come sooner than I’d like it to.

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I have a couple small achievements to report that have been left out due to the whole “it’s in my brain” thing that’s been our focus of attention since last Thursday.

I walked up all 14 stairs from the first floor to the second floor, and then into my apartment, while carrying a 10 pound oxygen tank. I did not stop to rest in the middle, and I was not panting when I finished. I didn’t walk fast but it means the physical therapy has been working.

Speaking of which, I have just “graduated” from home physical therapy (ie, insurance won’t pay for more), which means I will soon start outpatient. In the meantime, I will continue the exercises I have. There’s a place two blocks away where I’d like to be seen.

Finally: I am able to comfortably breathe room air again–not only while I am sitting, but also when I am sitting with people and talking. My blood oxygen saturation does go down to the 91-93 range, which means if I exert myself it drops into the 80s, but I’m hopeful that will improve over time. Also, after a bit of adjustment, 2.0 litres of oxygen is as good as 3 for when I need it, which is when I’m moving around doing stuff or exerting myself at all.

Up next: Susan Sontag.

20 December 2024 Cancer Crawl: punch in the gut after exhaling; what I want from other people

When I posted on Tuesday I did not think it was a good news / bad news situation, but here we are. Yesterday the MRI results came back and there is cancer in my brain.

The nodules are small, so I am not in any immediate danger. And as far as I know, I am asymptomatic. [But yes, I am absolutely going to blame every mistake and bad behaviour on my brain mets from now on. “It’s not me, it’s just my passengers.”]

But there are a bunch of them. The plan for the next six weeks or so is “watch and wait.” I’ll have another scan at the end of that period and we will see if the cancer is growing, shrinking, or staying the same. It’s possible it will react to the medication I’m already on, in which case, I am all set for now.

Of course, it’s also possible it won’t. We discussed options, which do exist, but are of the more medieval variety than the ultra modern “here’s a pill that targets your exact genetic version” I’ve been working with. More on those later once I know more. We are meeting with a radiation oncologist on Monday.

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So how are we feeling? Not good! It’s my brain, which is up there with my lungs as a candidate for #1 on any top-10 list of my favourite internal organs. The news, which was delivered professionally and with compassion, really did feel like a punch in the gut. We had about 48 hours of feeling hopeful and now we are back in a land of uncertainty and danger. In our second and third appointments, the social worker and I got “into it” so I have a good cancer therapist while I’m here. Nevertheless, Carrie and I are both still pretty stunned. It was not the expected news at all, and not news anyone wants to receive.

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This would be a good time to remind readers of things I do and don’t want; and of the circle of care. Cancer in brains is scary for anyone, especially intellectuals, and it’s normal to have a strong reaction to scary news.

Tl;dr: nothing has changed since my last post in terms of the kind of help and support that I need (and do not need or want) right now or the kinds of interactions I want to have with people.

My last post and some social conversations have already yielded volunteers for hauling things upstairs, which has been really heartwarming. People step right up when asked. There will be a few other things on my spreadsheet, and I’m confident I’ll get the help here I need in the short term.

In terms of how to interact with me, I would like to enjoy life as much as possible. I’ve got six weeks until I learn much more about my brain. I don’t mind talking about my condition or my feelings but I don’t want it to be the only thing I talk about. It’s not interesting or fun to repeat the same stuff over and over. We could be talking about your life, ideas, music, gossip, cats, sports, or anything else.

Messages of solidarity and support, checking in, and pictures of cute animals are always welcome. I like to hear good news from other people as well. Somehow there was this moment where terminally online people weren’t supposed to share good news because bad things were happening to other people. That moment was ridiculous. I blame Xitter.

I can’t respond to all of them in a timely manner, so please cut me some slack there.

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I don’t know where I learned the circle of care, and it’s a hokey concept, but here goes:

The patient is at the centre, with intimate caregivers (like Carrie) in the first ring (honestly, based on years of disability studies reading, I think the caregivers are in the ring with the patient),

Then close family and friends in the second ring , and on and on, ring by ring.

One gives emotional support to the people in the rings to the inside of where one is positioned, and one receives emotional support from the rings outside of where one is positioned.

Care and emotional support goes inward, processing your own feelings goes outward.

17 Dec 2024 Cancer Crawl: Exhale slowly

Tl;dr we got some good news, and we are waiting for a little more.

This morning we awoke before dawn to get to the Mass General for an 8:30 appointment–first bloods, then nurse practitioner, then oncologist. (There’s probably a whole post in how I am now very slow in the morning compared to my former self.)

Pretty quickly into the appointment, we found out it was good news, which was confirmed by the oncologist: based on the CT scan, the drugs seem to be working. At least some of the new masses in my lungs have reduced in size. This is huge news because it means the treatment is working. It doesn’t mean the treatment will work forever or that I’ll be cured or in remission or anything. But in the near term I should continue to improve. I know I said my suffering is essentially meaningless in a previous post, but it is a lot easier to put up with side effects when a treatment is working to keep you alive.

The other Very Good Sign is that they demoted me from every-two-week appointments to a monthly schedule, which suggests they are confident in my condition continuing to improve, or at least to stay stable.

The NP also took me on a walk around the clinic floor without oxygen to see how my breathing was. Afterwards I was told to drop my oxygen to 2 litres from 3 and try breathing plain room air when I am sitting still. I think I may need some extra oxygen for talking while sitting, but we will see. That’s great news. I’ve been on 2 litres all afternoon and I think it’s ok.

This was also the first appointment I did on foot rather than being wheeled around in a wheelchair. We got dropped off at the actual building (long story but that usually doesn’t happen) and I decided I wanted to go for it.

For the fever, we are going to try having me self-manage it, which simply means going off the meds for 2-3 days when it seems my fever is starting to go up, and keeping a calendar. The other option is steroids, but the problem is that they are not a long-term solution, and the hope is that I can stay on the medication long term. The oncologist said that some of her patients stop having the fevers after awhile, so for now I will just try to pay attention and hope.

For the vomiting, all I can do is hit it preemptively with drugs faster than I am now, so I will experiment with that and live with being drugged up more than I would like.

One bit of unfinished business: we don’t have the MRI results yet. I have taken up the practice of letting the doctor explain test results to me rather than reading them myself, for all the reasons one might imagine that’s a good thing to do. But I’ll have to make an exception in this case. I would expect the MRI would not have bad news in it given the CT results, but one doesn’t know until they know.

So what does it all mean?

After we came home, Carrie bought a ticket back to California on the 3rd of January. We’re going to have a nice winter break here and then try this sabbatical thing. If all goes well, I get 5 more semi-normal months in Cambridge and she gets 6 more semi-normal months at Stanford, and maybe I’ll even be able to join her this summer.

In kickstarter language, my “stretch goal” is to be able to visit her in California over spring break, but that’s entirely dependent on my breathing and oxygen needs. If that doesn’t work, she’ll be stuck visiting Cambridge instead.

“Independent living” can mean many different things. I am going to have to lean on local friends for a few things I cannot yet do myself–mostly involving bits of physical labour like carrying things up stairs to the apartment. I am sure the first week is going to be especially challenging as I discover all the things I didn’t account for. I am going to have to be extra vigilant about my body temperatures and cut off my vomiting cycles at the beginning. But that’s not fundamentally different from Carrie having to be extra vigilant about her blood sugars.

Radcliffe doesn’t start up officially again until the end of January, but the building is open to fellows. So I have a lot of flexibility those first few weeks to try and fail–and to work on my strength and stamina. My goal will be going into work at least 3 days a week, allowing for medical appointments and the like.

After the fall I’ve had, I consider the news today a major win. Both of us just feel very relieved. We are both cautiously optimistic for the next few months. I still have a long way to go, and there are no guarantees, but I’m used to living with uncertainty. This is just a new mode of uncertainty.

Cancer Crawl 16 December: Yesterday did not go as planned; extended technique

Yesterday kind of went to shit. I had two cyclical vomiting episodes. I’m still not an expert in how to handle these but I tried two different strategies. The evening one, of hitting with Ativan and Zofran more or less right away, seems to slow it down pretty quickly. I then followed up with a cough suppressant. “Waiting to see if I really need to take drugs because I really don’t like being on drugs” — the morning strategy — led to over an hour of vomiting. So lesson learned.

Now, I’m not on any opiates this time, so why did it happen? The answer is probably the fever that started up in the afternoon and spiked to 103 by evening despite me taking Tylenol on the prescribed schedule. So I hammered myself with more Tylenol and Advil and paused the cancer meds until I see my oncologist on Tuesday. I went to bed at about 8:30 and by 12:30 my fever was gone.

The day wasn’t all terrible, as mostly I wound up sitting around on the couch and watching football and a friend came by to join us.

I don’t think I’ve ever had so much Ativan (and definitely not Zofran) in a single day. And I did have the most amazing dream last night. I actually hate compact discs but in the dream I didn’t, and they were more like flexi-discs. And there were record stores, except they were more like Spotify or Apple Music where you could just take whatever you wanted, so I was busy doing that with a bunch of music I’d never heard (I had fallen asleep to some weirdo Buchla synth record off Bandcamp but that was not playing in the dream).

But then, as I’m “shopping”: a small group of free improv musicians show up. My experience of the genre is it’s “free” in some ways but you’d better bring an upright bass and not a bass guitar. So I asked them if there are any electric bass players in the genre. They take me on a tour of free improv electric bassists through a portrait gallery where the portraits start moving. One player is playing their bridge; on another instrument there’s a pair of hands doing all sorts of manipulations and the strings are bending and melting; all sorts of wild stuff that goes beyond what physics would allow for extended technique. Very “if Salvador Dali was a luthier” vibe. I remember thinking I was excited to learn how to do a bunch of that stuff.

So on the whole “days are segments” approach, there were some highlights.